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| Bird dogging is a communication technique people are using with weasel-y politicians. It could help you communicate better with your doctor! |
1. Be non-confrontational. You may think your doctor isn't doing a great job or ignoring your questions because he or she is not very well informed about ET. If that's so, getting a second opinion should be on your to-do list. The MPN Research Foundation has a good resource page to get you started if you're looking for a new doc. You won't get anywhere with your current doctor if you have a chip on your shoulder.
2. Be brief. Specialists are busy. They're smart. They do a lot of research and reading to maintain their specialties. They see large numbers of patients, many of whom are very seriously ill. If you're over 60 and have ET, you're going to get less attention than a child with acute leukemia. That's just the way it is. Don't tell the doc your life story.
3. Explain what's important to you. Doctors and hospitals always have another treatment option for you. You may not want it. It's vital that you think about how much treatment you want and convey that to your doctor.
4. Ask specific, direct questions. I've found that the "why" and "what" questions often get to the heart of the matter quickest and get the most specific answers.
Here are some situations where bird dogging might help:
1. You've been diagnosed with ET, and the doctor says she wants to do a bone marrow biopsy. The idea of the biopsy scares you, and you are confused about why you need one because you already tested positive for JAK2 or another mutation. So you might say: "I have a pretty low pain tolerance, and I have heard that the biopsy can be painful. Why do you recommend one?"
2. You've had ET for many years and have just taken aspirin to reduce clot risk. So it comes as a shock when the doctor tells you he wants to put you on hydroxyurea. You could ask: "I want to do what's best, but hydroxyurea comes with some side effects. Why do you think I need to take it now?"
3. You have been doing OK on hydroxurea for some years, and the doctor decides she wants to change your med. Your question: "I'm 64 and quality of life is important to me. I've felt very well on the hydroxyurea. Why will the new med be better for me?"
4. Your doctor notices that some of your blood levels are changing and orders a lot of lab tests. You are apprehensive about what this might mean. You could ask: "I am concerned about the blood level changes and lab tests. What will they tell you?"
5. Your doctor tells you about a clinical trial for a new drug. This raises a lot of questions that the doctor probably doesn't have time to answer. You could say: "I might be willing to consider participating in a clinical trial, but I need to know why you think I am a good candidate and where I can get all my questions answered."
6. Your current medication gives you some troublesome side effects. You might ask: "I have some nausea when I take my hydroxyurea. What can I do to make this better?"
You can probably think of lots more situations in which bird dogging your doctor might help. It may seem artificial, but writing out questions using bird dog techniques might be a good idea. You could even practice with a friend or family member.
Let us know if this technique works for you. Or pose a situation to us that we could help you bird dog! Here's hoping we all get improved info from our doctors as we learn to communicate better.
Be well!
Related: Does your doctor CARE?
I was diagnosed with JAK2 ET (themia) in 2015 after bone marrow test. Have been on aspirin but now platelets are in high 800s and specialist wants me to go on hydroxyurea. I'm 64 and worried about side effects. Is there anything else I can try, alternative/natural options? No blood clots as yet thank goodness. Suggestions please.
ReplyDeleteGlad you are clot free! You can ask your doctor about anagrelide, Jakafi, and Pegasys. Also ask if he can start you on the lowest dose and work up to what your body responds to. This gives you a chance to develop a tolerance to any short-term side effects, and makes any initial side effects milder.
DeleteAll meds come with some side effects, sadly, and I know of no natural treatments that have been scientifically proven. You can, of course, lower clot risks with exercise and diet.
Patients over 60 need to worry far less about long-term side effects from HU for the simple reason that, statistically speaking, we are likely to die of something else before the HU causes anything serious.
I'm 65, have been on HU for two years. I feel fine, and I don't worry. But I was scared about it at first and it was upsetting to know the ET had progressed to the point where I needed chemo. So I understand where you are coming from.
Thanks Jean, the specialist said last year that maybe there's a chance of going on Roxulitinib (Jak 2 inhibitor - think that's how it's spelt), haven't heard mention of the other meds. My other bloods aren't doing so well either and my MD (doctor) is worried about the potassium, wbc 17, ferritin 27 (iron 4,saturation 4), alp 147 to name a few. Diet - other than healthy eating? Doing low carb low sugar, not that I'm trying that hard, lost about 6kg over last 9 months. Seeing specialist tomorrow for yearly review so will see how that goes.
ReplyDeleteRuxolitinib (Jakafi). It is prohibitively expensive in the U.S., but seems to be affordable elsewhere.
DeleteRuxolitinib can cause some patients to gain weight and increase hypertension. The biggest concern is whether Jakafi might be a factor in progression to AML in some susceptible patients. It is a new drug and less is known about side effects than about hydroxyurea, aka hydroxycarbamide.
So I would ask your doctor why he/she believes ruxolitinib is the better drug for you, and I would ask what role, if any, it might play in disease progression.
Some people feel the Mediterranean Diet helped with fatigue. But it's not going to correct your blood levels, sad to say.
Best with the specialist tomorrow. Please do share anything you learn!
Well saw the Registrar & Hematology nurse today - first time with both, still haven't met the head specialist. Great meeting, I agreed to go on Hydroxyurea (Hydroxycarbamide 500mg daily, which I was told was the lowest dose, although was told that it doesn't need to be daily for some people) with the agreement that if it doesn't work out I will come off it. Roxulitinib was not available or rather it is but have to try Hydroxyurea first. They will be monitering my bloods with test every 2 weeks & doing venesections depending on those results. I will get another appointment in 3 months, or before if necessary.
ReplyDeleteAfter 4 years I now have someone (hematology nurse) to contact if I have questions - before nobody to contact other than my doctor until I got another yearly appointment.
Mentioned diet but as nothing seems to cure this disease although a Mediterranean Diet seems to help with clots, blood pressure and general health anyway. I've been doing Low Carb & trying to cut sugars (as we all know sugars feed cancer). So will look at combining the two if I can.
I also asked about getting the shingles vacine which will be free for me next month when I turn 65 and that's not a problem apparently. Nurse gave me 11 pages on Hydroxyurea to read - from Macmillan Cancer Support I saw on their website a link for ET as well when I did a search for Hydroxy https://www.macmillan.org.uk/information-and-support/treating/chemotherapy/drugs-and-combination-regimens/individual-drugs/hydroxycarbamide.html
So I felt quite positive coming out of the appointment. Now just have to wait and see what the results are.
I was given a booklet when I was diagnosed which explains the disease put out by the Leukaemia Organisation here in New Zealand called Myelproliferative Neoplasms (MPN). In it it explains that Hydroxyurea works by suppressing the function of your bone marrow and thereby controlling platelet production, while aspirin prevents your platelets from aggregrating and forming harmful clots in your body.
I'm so glad it went well for you! It sounds like they are doing careful monitoring, and not hitting you with a big dose of HU to start.
DeleteThe nurse is a plus. Often they do a better job listening and explaining than the doctors.
I got my shingles vaccines this year. Feeling punky for a few days after is par for the course. Worth it not to have shingles dragging on for weeks.
Take care, Sue, and keep us updated.
P.S., My HU came with a prescription for an anti-nausea pill. I never had to take it, but you might ask the nurse if one will be prescribed for you. Made me feel better to know that I had it just in case.
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